The Emotions of Caregiving – Father and Daughter

The Emotions of Caregiving – Father and Daughter

Dad was angry. Fist bangin, Marine-cussin, jerk-away angry. All the time. At everyone and everything. He was angry because he couldn’t seem to do anything the way he wanted to; which was independently, on his own, by himself.

It was something I couldn’t fix. I could try to meet his every need, show him ways to adapt to each loss of ability, while inwardly coping with the fact that my Dad, the man who could do anything, couldn’t any more.

His anger and my helplessness to change it made me realize that this belligerent old man in the wheelchair was no longer and did not resemble “my Dad”.

I was so busy coping and caregiving that I didn’t linger too long on any alternative thoughts. During one visit it was just the two of us in the TV room and he looked at me with tears of frustration streaming down his cheeks. He said “If I had a forty-five, I’d shoot myself in the head.” I began to cry too, and all I could do was say with all my heart “If I had a forty-five, I would give it to you Dad!”

I don’t know anything about guns. So I wouldn’t know where to get a “forty-five”. But I am a longtime member of the Hemlock Society (now called “Final Exit Network”) and another organization, “Compassionate Choices” that work to give people some rights and say–so at the end of their lives. I have some knowledge. I believe that we owe the people that we love the same kind of compassionate end-of-life that we can give our pets when they are in pain and are not going to get better.

But I had never discussed this specifically with Dad. He had written out a statement with his will (as many people do) saying “If I am in a coma, with no hope of recovery, then turn off life support. I will not be there.”

How simple that sounds. Why did we not see how narrow a simple statement can be? Was it because even that simple statement can become controversial? Because it’s easier to make that statement about a hypothetical situation? Because it’s not always as clear-cut as an irreversible coma?

Dad had physical and cognitive problems, significant and serious. But they weren’t terminal. I see now how important my father’s intelligence and capabilities were to his self-image. I see that now after going through the experience with him…and I see it in myself. My end-of-life plans, my Advance Directives, are now as detailed and explicit as I can make them.

How I wish I could have taken more aggressive steps to help him end his misery earlier. All I could do was to recognize the first physical complication that came along that might be a threat to his life if not treated…and make the decision not to treat it.

The treatment, amputation of one foot, would have been devastating. He wouldn’t even have been able to understand why, much less recover and rehab. It would have kept him alive a while longer, but it wouldn’t have given him back the life he wanted. It would have made his situation horribly worse.

Even though I was quite sure about the decision to withhold treatment and let nature take its course, I still had moments of agonizing doubt. When I told him he was very sick and he might not get better, with his eyes closed he mumbled something about “…see a doctor.” Did that mean he wanted me to get medical help?

I also felt guilty (antibiotics might have worked, or even amputation…). After all it was my decision to make because he couldn’t. And my decision was going to result in my Dad’s death! Was I killing my father?. I felt anxious about how he was feeling. Was he getting enough pain medication? He was refusing to eat, even his favorite ice cream. His eyes remained closed, and he wasn’t speaking, yet he raised his eyebrows when his grandson came into the room, almost like his eyebrows could pull his lips up into a smile.

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